How did your husband find out that he had prostate cancer?

R.: His primary care physician did a yearly PSA test. My husband’s father had had an aggressive form of prostate cancer in his mid-50s. He had radiation and did survive. She knew of the family history, so she ordered the PSA test. When it came back elevated, she referred him to a urologist who then did another PSA in his office. It was further elevated. The urologist wanted to do a biopsy. We were hesitant at first, but because of his father’s history, we decided to do it. About a week later, we found out about the cancer.

What was your reaction to the diagnosis?

R.: My husband J. was actually fairly calm. He said he figured he would get it eventually because of his father’s history. I was pretty calm about it too. I’m not even sure why. We had no idea how complicated prostate cancer can be. We were pretty innocent.

Did he have trouble with ED before prostate cancer?

R.: He did a little bit. We were older; J. was 69 when his cancer was diagnosed, so we already had some difficulty because of his age and blood pressure medication, but nothing major.

What kinds of prostate cancer treatment did he end up getting?

R.: He had a robot-assisted, nerve-sparing radical prostatectomy in April 2016.

Did you explore the idea of radiation or did you know right away that he wanted surgery?

R.: We did explore radiation. We saw two radiation oncologists and one surgeon. We were going to go with radiation at first. The radiation oncologist had J. fill out a self-evaluation form that asks about the man’s urination pattern.I questioned his answers because our bathroom is right next to the bedroom. The urologist had him fill out another one during a follow-up visit, and based on those results he ordered what he called a uroflow test.

We talked about it with the second radiation oncologist and realized that because he already had some issues with urinating, probably from prostate enlargement, that we would have to go through this entire rigmarole of a transurethral resection of the prostate and hormone treatments before he could begin radiation. Based on that discussion, we went back and chose surgery.

What kinds of conversations did you have about potential side effects after surgery? Did your doctor talk to you both about ED?

R.: They all did. The urologist did a good job of it. He went through each option and talked about the potential for ED with each. Then, when we talked with the surgeon, he was very emphatic about it based on my husband’s age and the fact that he had preexisting ED issues. He was really emphatic that we may come out on the other end with a lot of issues. We went in pretty prepared.

I had done a lot of research. J. had talked to a few men he knew. We knew from the get-go that his penis might be smaller, that he could have trouble getting an erection and maintaining one and so on. We talked about it and agreed that we would just deal with it.

Did they talk to you at all about things that he could do before the surgery? I know that some recommend a low dose of Viagra (sildenafil).

R.: The surgeon might have mentioned this; I truly can’t remember. My husband’s father had had a vision problem from taking Viagra (sildenafil), so we really didn’t want to do anything like that if we didn’t have to. I had been reading about Kegel exercises. I tried to talk to my husband about that for the incontinence, but then I learned that Kegels were good for ED. Other than the medication, the surgeon didn’t suggest anything.

Did you have a plan for rehabilitation after surgery?

R.: I have to be honest. That was the most frustrating part. Both the surgeon and the urologist said, “We’ll help you with ED afterward,” but we realized what they meant is, “We will write prescriptions for whatever you need” —Viagra (sildenfil), MUSE (alprostadil). After my research, we were more interested in a full penile rehabilitation program and neither one of them mentioned that. I don’t know if that’s universal or if it was just because we’re in a small town.

What kinds of problems did J. have after surgery?

R.: It was interesting. When the catheter was removed, my husband was eager to test the waters. We were able to have some form of intercourse. His penis was smaller and it wasn’t quite as firm as it had been before. It was enough to have intercourse, but afterward, there was a huge, huge amount of bleeding.

We contacted the surgeon and he said not to worry about it; that it was no big deal. He related it to the bladder and the urine. I just couldn’t seem to get him to understand. He said no limitations. Go ahead.

We did it again. And again, my husband had just a horrible amount of bleeding.

Finally, I was able to get the surgeon to understand that this was related to sexual activity. Then he said, even though he hadn’t heard of it before, he wasn’t concerned. He said to wait for about a week and see what happened. It did heal. It was somehow related to the tissues related to orgasm or erection.

That must have been frightening.

R.: It was. My husband is very sexual, so it was hard for me to say no to him. Let’s not do anything until we find out.

Was he in pain?

R.: No. Just the bleeding.

Did he use any ED treatments after that?

R.: It worked out on its own. In fact, when we talked to the surgeon about the bleeding, he asked if we had done anything like Viagra (sildenafil) because he had written a prescription for it. We didn’t. We didn’t have to try any of that. He did do the vacuum erection device to oxygenate the tissues so that they would have as much as they needed to heal. That was the only thing we used.

Was it effective?

R.: Yes. I’d read that after surgery the penis can be smaller. The vacuum erection device helped with expanding the girth. It was helpful in that way. It was encouraging for him because he could see this enlargement that he might not have seen without it.

We didn’t use it for intercourse, though.

What were your feelings while all this is going on?

R.: Most important was to make sure that I supported him and guided him through this.

One thing we experienced was a little bit unusual. When he came home from the hospital, the patch that holds the catheter tubing to the thigh completely came off. There was nothing holding the catheter tubing to the thigh. We were intensely concerned and worried about not having any tugging. Those first 12 days before the catheter was taken out we had to keep that together. We learned later that his thigh should’ve been shaved as part of pre-op, but it wasn’t.

I have a background in nursing from about 30 years ago, so we felt fairly comfortable with me helping with that. I also helped him shower. Then afterwards, he would lay down on the bed. I would apply patches that I bought from a nearby medical supplier.

It was a very intimate period of time. J. found it stimulating from a physical perspective. Every day I was touching him both in the showering and then in getting his catheter tubing patch put back on. We had an intimacy that we might not have had. He was really comfortable with me doing it.

You maintained intimacy and contact until sexual activity was possible again?

R.: Yes. It was a nerve-racking time for me because I was the one who had to be sure that we got the tubing attached. But it also had an intimacy—that he would trust me like that. It created this full experience that was beyond just having surgery.

That’s actually kind of wonderful.

R.: It was. I mean, I wouldn’t recommend it, but it definitely moved us into a whole different space.

You were comfortable talking to each other about potential problems with erectile dysfunction but what about discussing the issues with other people?

R.: We had no issue between us at all. We talked about it. We’re both really private people, so talking with anyone else initially was really just beyond anything I could think of doing.

But later, I did need that kind of support. When I researched prostate cancer, I found irreplaceable resources: Us TOO, International (an organization that is perfect because they are devoted to prostate cancer specifically), and from their site, I learned about Imerman Angels. They offer one-to-one support, not only for people with any kind of cancer, but also for spouses or caretakers. That was life-changing. I met a woman whose husband also had prostate cancer surgery. She got it. I could tell her about the bleeding. I could tell her about my worries about incontinence, especially during intercourse. She became a lifeline for me.

Was this email or phone support?

R.: It could be anything I wanted. I was more interested in doing email. She lived in another state but was in the same time zone. She was open and honest and I was open and honest. It was just a relief.

I’ve heard a lot about these bigger support groups, but it must have been good to have that one-on-one connection.

R.: It was. I think later, as I got more comfortable and as we moved through things, I would’ve enjoyed a women’s group. We live in a small community and there isn’t anything like that here.

I hope to eventually create a women’s group to give back.

My husband and I are also writing a book. Part of what I want to put in the book is an honest discussion about the intimacy issues we went through. It helped me to read other women’s stories. It makes me feel a little bit more courageous about sharing.

Many patients and their spouses get a lot out of hearing other’s stories. It makes you feel a little bit less alone.

R.: Exactly. We didn’t tell anybody in the beginning that he even had cancer, but when we did start talking about it, we found that people had a tendency to dismiss it. Oh, you’re lucky. It’s just prostate cancer. It’s a quick fix. Nobody talked about the intimacy issues, because that’s embarrassing. There was not only this wall of what we couldn’t talk about, but there was also the perception that prostate cancer was just no big deal. He could have his treatment and we would be done with it and should just move on.

That must’ve made it even worse: being worried and scared about something while this other person is reacting as if your fears are trivial.

R.: Exactly. Part of what I want to do is educate people about PSA testing after treatment. This testing lasts a lifetime. That it isn’t just over and done with.

Do you have any advice for men and their spouses?

R.: My greatest encouragement is to communicate openly with each other from the beginning— through the research, treatment and post-treatment. Perhaps start with something that isn’t quite as intimate as ED. I began with general research (basics of what a prostate is and what it does), then moved into the different treatment options and side effects. I sorted through everything (in books and online) and shared the information I anticipated he would want to know. We then covered specific topics in more depth together. By the time we got to ED, we were able to talk about it more easily. I’m the one who works a lot with the computer, so this was natural for us. I’ve always been the one to manage the medical records and medications, etc. I anticipate this might be the case with other couples.

You mentioned wanting to start a women’s group.

R.: Yes. I’m now ready to have a larger group to provide that kind of support. I’m trying to build up my courage a little bit to do it. I’ve done groups before with online journaling groups and then in-person journaling groups. To step out and organize a group for women is a bit daunting. I’ve had good support from Us TOO, International, both through their online women’s forum and directly from several women who facilitate groups, as well as the program director.

I think you’d be great at it, though. You’re so open and honest and calm.

R.: It took some time getting here. That’s why it feels so important to do this interview and write the book. We absolutely have to be able to talk about this.

At one point I was talking with my husband about Imerman Angels for men with prostate cancer and my husband said, “I don’t need support; I’ve got you.” I said, “That’s true. You do. But I don’t have anybody.”

I want to remind women that we need support too. A lot of it does fall on us: to do the research, to make sure they’re eating right, and that they’re doing all the things they need to do. We can wear out.

What was interesting is that before the surgery I thought, “It’s not going to be any big deal to me if he has ED. I’m concerned about him and his reaction, but I’ll be fine.” Then I realized after the surgery that it was more important to me than I thought. That we would lose that kind of intimacy and sharing. That was hard for me, too.

It’s an integral part of a marriage. If that disappears, then what happens to the marriage?

R.: This was truly an important topic, even though I’d thought it wouldn’t be. That’s where that communication comes in: talk about it from the beginning. Start with what’s less threatening. Then by the time you get to something that feels as big as ED, you’ve got this foundation built up.

That’s a discrete, logical way to approach it.

R.: Exactly. My husband is a contractor. He saw all this like building a house. It was all very structured and step-by-step. I learned to present things to him in his language. Not how do you feel about this, but what do you think about this? I’ve looked up this research. What do you think about it? I tried as much as possible to approach him more logically than emotionally because that’s how his mind works.

Would you suggest to men and their spouses that they see an ED specialist before they even have surgery as a way of preparing themselves?

R.: If their insurance covers it, I would go anywhere, do anything, visit with anybody, before you do anything. The more informed you are from more specialists, the better.

The more you know going into it, the better you’re equipped to deal with whatever happens after?

R.: Absolutely. It gives you confidence going in. We found out that the penis can become smaller after surgery by talking with some men that J. knew. We knew going in that that’s what we’d be dealing with. If we hadn’t known, we would have been stunned and lost.